Doing the honours: Q&A with Jan Tregelles CBE

Thank you for joining us to tell the readers more about what you do, and, and what you enjoy most…

I’m Chief Executive Officer of Revitalise, the UK’s largest provider of respite breaks and holidays for disabled people and their carers, and Chair of Access Social Care, a charity I founded with the CEO, Kari Gerstheimer, in April 2020, to provide free legal advice and information to people with social care needs, helping them to achieve a better quality of life. 

I consider myself to be the luckiest woman in the world from a professional standpoint. Supporting disabled people and their families has been my dream job. I started to prepare for it 30 years ago at New Era Housing Association, where I developed community-based housing for people with a learning disability. In 1996 I moved to Mencap, setting up Golden Lane Housing to create sustainable improved housing options and solutions before becoming Director of Personal Support, a position I held for 12 years.

What I enjoy most is the impact we make, working with disabled people and their families to help them achieve the outcomes they want through our breaks and holidays. It is the stories the guests tell about how much breaks mean to them that inspire me to keep going, no matter how challenging it is – and it is. What we offer sits outside of the social care system in that these are not statutory-funded services. Yet we are so impacted by social care because we are regulated and because our guests rely on the system for support. This challenging model means we are one of the only organisations of our kind who do what we do – and therefore a lifeline to people who, without us, might otherwise have no opportunity to take a break.

What led you to the role you’re in today? 

I was appointed CEO of Mencap in 2013, overseeing the delivery of the charity’s first ever strategic big plan, using my experience and knowledge to benefit more of the 1.4m people with a learning disability in the UK – most of whom receive no statutory support.

After I left, I founded Access Social Care in response to my deep frustration disabled people and their families were not receiving care to which they were legally entitled. I knew the only way to solve this was by using the legal system. Today, we support families to achieve the funding and care support they are entitled to by law.

I got a call about an interim CEO role at Revitalise. They needed an experienced social care leader to come in for a period of time while they recruited the full-time post. I hadn’t heard of Revitalise before but was instantly drawn to the cause – supporting people with a learning disability led me to appreciate the enormous power of regular and enjoyable respite breaks. I have seen all too often the impact of the lack of access to respite disabled people and their carers still face, despite its enshrining in statute.

I committed to undertaking a service visit before considering it further, and it was in our centre in Southport that I became completely hooked. I was talking to a couple who were there for a romantic getaway – the husband was a carer to his wife, who had had a stroke and was profoundly disabled. The team had set them up a table for two with a bespoke menu, white tablecloths, and a rose in the centre of the table. They were so overwhelmed by what was such a simple gesture which enabled them to feel like husband and wife again, something they were so rarely able to feel. I was moved to tears and accepted the role the next day.

What are the aims and purposes of Revitalise?

We have huge plans to redevelop and expand our provision to ensure we are an exemplar in the care and support of disabled people and their carers across the UK. We are also working on a family offering to enable whole families to come to stay with us, something for which there is enormous need but very little suitable provision. It is also our intention to set up an internal advocacy function within Revitalise, to support as many disabled people as possible to access respite funding, for which there is a statutory entitlement. Sadly, the lack of funding within social care means cash-strapped Local Authorities are making it difficult for people to access the funding they need, meaning they are in breach of their legal obligations and often desperate disabled people are going without vital care. This is particularly the case for respite. As financial challenges are the principal barrier to disabled people and carers accessing respite, it is vitally important they are able to access the necessary funding to do so. So often, this is a case of enabling our guests to advocate for themselves via the legal process, which many would feel overwhelmed by if they had to tackle it alone. We also wish to provide advocacy support across a range of social care funding issues. We would welcome the opportunity to have discussions with solicitors who might be interested in supporting our advocacy function.

What role does Access Social Care play in advising clients?

Access Social Care provides free legal advice and information for people with social care needs, helping to achieve a better quality of life. We highlight the gap left by cuts to legal aid and provide advice for those who can’t afford it. We don’t go to court, but with a 98 per cent success rate, our network of lawyers and barristers ensure fair access to justice when things go wrong. We collaborate with social services while ensuring legal obligations are met. Our vision is a future where social care is adequately funded and we all get the support we need.

We have a team of solicitors and specialists in community care who are committed to providing specialist quality advice as soon as an issue arises. Early intervention is really important and legal aid is not accessible for most people. There has been a 77 per cent reduction in the number of new cases taken on by firms with a legal aid contract, within the last ten years. Access Social Care receive fantastic pro bono support from city firms, including Baker McKenzie, Slaughter and May, Fieldfisher, Orrick Herrington and Sutcliffe, and Shearman & Sterling, as well as a panel of barristers.

To reach more people, we have developed a prize-winning legal information chatbot. People with social care needs, their carers and advocates can ask the chatbot questions and the chatbot provides free legal help, 24/7. Developed in partnership with communities, our chatbot empowers people by helping educate citizens about their rights. It enables people to enforce their rights through reliable information and template letters which can be tailored and sent to relevant authorities. 

What is a normal working day for you?

My role is extremely multifaceted, and every day is different. We just agreed our new theory of change and three-year strategy, which will see Revitalise engage in a major redevelopment and expansion plan to increase our reach and impact across the UK, funded by a major capital appeal. In addition to overseeing the delivery of the strategy and operational plan, much of my time at the moment is engaged in meeting with major donors, ambassadors and politicians to garner support for the campaign, as well as overseeing the project itself. I also have direct oversight of our respite centres and support the team to deliver our service with excellence.

 How do you think lockdown affected vulnerable people?

Covid-19 and lockdown itself had a devastating impact on disabled people and their families. The Emergency Coronavirus Act allowed local councils to downgrade services for the disabled and elderly. Almost overnight, day centres closed, and in-home care services were either reduced or stopped altogether for thousands of disabled people. 4.5m people became carers overnight. Sadly, many of these services have not restarted and millions of family carers face the reality of continued, intensive, round-the-clock support. Government announcements, intended as a reassurance to the majority, that underlying health conditions make death from covid-19 more likely, left disabled people and their carers feeling frightened and isolated. Shockingly, the ONS reports six out of ten people who have died with covid-19 were disabled. Millions of disabled people and their carers had to shield for more than a year, forced into intolerable isolation. Loneliness and anxiety remain endemic, disproportionately affecting disabled people’s mental health. In these circumstances, an accessible break is not a luxury but a lifeline, a necessity.

What are your views on vaccination requirement changes for NHS and social care staff?

This is an enormously complex issue. At the time of writing, the Health Secretary has just announced a major U-turn on mandatory vaccination for both NHS and social care workers due to the significant campaign by NHS unions and professional bodies about the potential impact on staffing in the NHS, the success of the vaccination programme, and the evolution of the virus into a milder strain. Members of the social care sector, including Revitalise, voiced similar concerns prior to the mandate for social care; both sectors are facing an acute staffing crisis which is the worst in memory. At the heart of it, everyone wants to know they are going to be cared for safely and not put at risk. Every provider delivering care wants to ensure the same and to deliver the very best outcomes they can for their guests. As a charity, we firmly believe vaccination is the best way to protect people from covid-19 – its effects have been proven. However, at the time of introducing the mandate for social care, the sector was already battling 100,000 vacancies, caused by many years of underinvestment in social care leading to enormous wage pressures, the impact of Brexit on supply of workforce, and of covid-19 on those who have simply felt burnt out after so many months of caring around the clock.

The mandate was introduced with no plans to address this issue and the result was inevitable; tens of thousands more left the sector and some providers have simply had to close their doors due to an inability to staff their services. This, in itself, a policy designed to protect, has put thousands of disabled and vulnerable people at risk, left with no choice but to care for themselves at home. The waiting list for people needing care in this country is currently at 400,000 and counting.

We were lucky enough to avoid service closure as we had a high rate of vaccination compliance, but prior to the mandate, we had already been struggling to recruit to vacancies – and it has now got harder. At the moment, we are having to cap the number of guests who we can support, meaning we are having to turn down people who are desperately in need of essential respite.

At Revitalise, we do welcome the U-turn because it will help to ease the staffing crisis – but it is not enough. We need urgent investment in social care – far more than the government has recently committed. We will continue to put our guests’ safety at the very heart of our services and adhere to rigorous infection control practices, while at the same time continuing to encourage vaccination take up as a safe way to keep everyone as safe as possible.

What would you most like to change in your sector?

Long-term, sustained investment in social care so everyone gets the care they need. We have enshrined this in statute, but local authorities are so under-funded they have no choice but to prioritise based on risk and deny people their legal entitlement. The government recently announced plans to inject more funding into the NHS and social care via the National Insurance rise and the new levy. Yet what has been allocated for social care is woefully inadequate – £1.8m additional funding per annum over the next three years. The Health Foundation estimates, in the next financial year, adult social care will need an additional £3.7bn just to meet demand and improve access, while an additional £7.9bn will be needed to ensure everyone has the social care they so desperately need. We have a statute but we need to adhere to it, or the government needs to admit once and for all it cannot provide the level of care to which people are legally entitled.

We also need for social care to be recognised on an equal footing with the NHS, for the caring role to be seen as the skilled profession it is. For too long, social care has been seen as the poor relative of the NHS – it is time for this to change. Without social care, the NHS couldn’t function. I would also like the role of unpaid carers to be more universally acknowledged and the astonishing contribution they make – saving us £132bn per annum. They need far greater support, financial, practical, emotional and in terms of wellbeing – regular respite in particular!

What do you do to ensure work-life balance when you’re not working? 

I love film and its capacity to transport you to other places and enjoy nothing more than a visit to the cinema, either alone or with my husband. I am also a passionate amateur genealogist and enjoy helping others construct their family trees, as well as expanding that of my own family. I have six children whom I see as much as I can, and I also like to run regularly.

Please tell us about your recent honour (and huge congratulations!)

Thank you. I was proud and delighted to accept a CBE in the New Year Honours list for services to learning disability. It was not just a reflection of my contribution; however, but of many colleagues and disabled people over the years. It has been a privilege to work alongside people with a learning disability and their families. Not only have I been touched and inspired by each of their personal stories, but the advocacy, dedication and ambition they have shown to fight for change in the sector has been instrumental in changing the lives of thousands of disabled people and their loved ones for the better.

Jan Tregelles CBE, CEO of Revitalise and Chair of Access Social Care, was interviewed by Chaynee Hodgetts, our Features & Opinion Editor and Mature Pupil Barrister with Nexus Chambers. Revitalise is a national charity and the only provider of centre-based respite holidays with 24-hour nursing and personal care in the UK, welcoming 4,600 guests a year to centres in Southport, Southampton, and Chigwell: revitalise.org.uk; accesscharity.org.uk